Life with Reflux

We always knew that Kyan would have to have a stomach operation when he was born, as that was picked up in the numerous scans Lauren had to have during her pregnancy. At only 12 hours old he was transported to Great Ormond Street (apparently he loved the ambulance!). We had been prepared for his operation and told it was standard and nothing to worry about; it was done the next day.

Kyan's first feed at Great Ormond Street

Kyan seemed to recover fine from the procedure but lots of other things started happening, which resulted in us ‘living’ at Great Ormond Street for the first month of his life. Everything you hear about GOSH is true – they are fantastic. Every single person we came across was lovely – from the doctors and nurses to the people on reception and in the gift shops.

It was a long month as they tried to figure out why Kyan was doing what he was doing – heart rate dropping every so often, holding his breath randomly (but never too long!), jaundice (which later was referred to as ‘prolonged’ – he changed colours quite a few times!), jittery movements and not digesting his feeds as well as they hoped. He had numerous tests done and I think every specialist from every part of the body checked him out – he had echo’s done, brain scans, lots of blood tests including checking his thyroid glands – even Kings College were involved at some point (to check his liver!). Every result that came back was ‘normal’ but only just. So, relieving but also frustrating. Everyone was relived nothing else ‘was wrong’ but also frustrated as we weren’t getting any answers. The fact that he was premature didn’t help, and actually ended up being the answer to most things.

It took awhile to get Kyan feeding; he started with just 3ml of milk! But we eventually got some sort of pattern going – through an ng tube as well as breast feeds. He had his feeds through his ng tube and Lauren was to be the ‘bonus’ feeds – which Kyan really enjoyed. His reflux started at about week 3 and has continued to be a problem in our lives every since…

It got progressively worse as we were moved from Great Ormond Street to our local hospital. A move we were not looking forward to and has traumatised us ever since! We only spent a week in our local but it felt like a year. In fact I’m pretty sure we were only discharged because I told them I was going to PALS.

Kyan at GOSH

Once we were home and had the full care of Kyan he seemed to do well (amazing what happens when the right medication is given at the right time!), however the reflux was still there and getting worse. The doctors from GOSH thought it was because his stomach was so premature and the muscles weren’t strong enough to work properly.

Kyan has ‘extreme reflux’ so it’s not your usual ‘throw the bottle up’. When Kyan has an attack he arches his back, throws his head back, goes red in the face, eyes bulge, screams in pain, and gets frothy at the mouth. He has a lot of acid that comes up. It starts with him throwing up through his nose and mouth and then gets worse. The problem is that he struggles to breath and then panics and makes things worse. To date, we have had to call the ambulance out 4 times. It is not nice watching your little baby have such horrible attacks.

Bath time at home

We have been back to our local hospital 6 times since we were discharged (due to reflux) and had quite a few appointments back at GOSH. Things seemed to settle down a couple of weeks before Christmas but then he had his immunisations and that set off his reflux again. It got worse throughout the week and then he hit us with 3 attacks Christmas morning (it took ages to open his presents!) and one really long one Christmas night. Not a nice way to spend our first Christmas as a family but at least he won’t remember it! (And he did get completely spoilt – we got him an
ipad 2 amongst other things!)

We were back at GOSH between Christmas and New Year for a procedure where they put a balloon down his throat into his stomach and enlarge his intestines. The thought behind it was that the intestines were small and his stomach was taking too long to empty so this procedure would speed up that process. Kyan recovered fine and although the doctors/surgeons thought it made no difference, we went ‘reflux free’ for 4 whole days! We were actually at the point where we felt like we could leave the house and start doing normal baby things, but that didn’t last…

Kyan looking at himself in his mirror

So the day I went back to work, he hit Mummy Lauren with a really long reflux attack. Luckily we hadn’t left GOSH with just a ‘he’ll grow out of it’ plan; other appointments had already been put in place. We have been passed onto the Gastro team now and they are going to investigate it further as they can’t understand why there is so much acid still coming up. Hopefully we will have an answer (and cure!) soon!